Monday, August 5, 2013

Balance

I was reading something the other day that stated it takes, on average, 17 years for a new medical procedure or concept to be put into universal practice. That's a long time in human years, I thought.

Since I come from a medical background, it should be no surprise to anyone that I think in mechanical, medical terms. A is not working well, so B must occur to return things back to normal. Over the years medicine has become a little more open to the idea that normal is, well, not always average, so we've altered that mindset towards achieving one's baseline. Everyone has a baseline that is unique to him or her. That particular idea took some time to kick in as I remember running across it in Nursing school. It's in practice today, 17 years after I graduated.

You can imagine then, once I realized that I was navigating the waters of I-have-a-son-with-Down-syndrome, how I felt when I learned that most of the society's current assumptions about DS are medically based...

(Yay!)

...and totally wrong.

(Dammit!)

So very, very wrong that it hurts both my heart and my brain to think about it. Most of the "common knowledge" about DS is not 17 years old, or even 30... it's more like 50+. That's an awful lot longer in human years. Despite all the ads and cute pictures of smiling children and promos and things that are done to "spread awareness", people still believe that having a child with Down syndrome will ruin their life. Society-at-large still believes that DS is a disease that people suffer and that people with it are sick and unhealthy in general. Mild to severe are still seen as appropriate ways to define one's functioning. We still cling to the notion of an "Intelligence Quotient", where a quantitative value is assigned to a qualitative concept. Despite this number not being able to tell you if a person is able to attend to the activities of daily living, people still use this. It helps when segregating the other. It sure did at Ellis Island, when it debuted...

But WHY is all this information so out of date? Why is society more apt to adapt to the idea that placing a tree directly across from your front door is bad feng shui, but that treating all people as equals, as fellow humans is about as foreign as algebra is to a pelican? While writing my A Brief History... posts, all I could think about was the persistent cycling; there have been numerous times in history where people with DS stopped being the other and for one brief second, almost became just another flavour of humanity. Then, as predictable as ever, the dreams of a post-scarcity economy evaporate due to a down swing or a war and Sha-ZAM! People revert back to the middle ages. It's once more "root hog, or die" and those that we briefly flirted with are once again the outsider. We're doing it again, in case you haven't noticed.

"WHY?", is always the question I ask myself. Why must we do this dance every couple of generations? Why must we have only a little forward movement, a little bit of enlightenment and then backslide?

Well, the answer is simple in it's complexity. We, at least in the Western world, ultimately fear and despise difference.

We are chock-a-block with privilege. There are many
forms, many shapes at play here in our culture. There is white privilege and skinny privilege, male privilege, big
breasts privilege and the list goes on. People can readily point to one or two of these things that have impacted them directly. One of the least understood is the privilege of the able.

And, it's a biggie.

It's so big, the roots go so deep that you don't even know that they are there. But they are, lurking under every conversation, every decision. Like some kind of giant underground fungus. Ableism isn't just a specific deed here and there, it's one of the foundations that our society is based on. <*shakes fist at Aristotle*>

Our language, the medium through which we navigate through this world, is inherently the problem. Yes, we can all point to the phrase "I see" as being ableist in terms of those who are blind, true, but it's bigger than that. It's the larger assumptions over there in the shadows that are really the source of all of this. They are statements like:

Able is healthy
Able is normal
Normal is natural
Able is good
Body is able
Able is educated
Able is well off
Able is well-born
Able is better off
Able is culturally acceptable/dominant culture/polite society
Able promotes positive family relationships

And, with this:

Disability is sick
Disability is not normal
Abnormal is unnatural, inhuman.
Disability is bad, evil
Disabled body is broken
Disability is uneducated
Disabled is poor
Disabled is base-born
Disabled is worse off
Disabled is ethnic, not acceptable in this culture/polite society
Disability destroys families

These are just a sample, but are the type of assumptions that underlie the way we look at those that are different than ourselves. Especially people with intellectual disabilities. This is the rhetoric that I and a few others have been on about. Ultimately, we in the Down syndrome community can have all the positive pics and feel good things we want, but to paraphrase Denis Leary (badly), we can have a giant kumbaya cake walk through the middle of the town square and it ain't gonna make a lick o' difference until we realize that as a society, we suck, okay? We are all guilty of this, no matter how well meaning. To those with actual disabilities, we parent advocates really don't have a clue and more importantly, don't seem to want to. We are simply, a bunch of dicks.

We have to change that. We all have to work together on this one, parent and self-advocates alike. We have to change the rhetoric, the assumptions in our language to things like this:

Disability is natural
Disability is normal
Disability is universal
Disability is good
Disability is welcomed

Then hopefully, it will end up looking something like this:

All are natural
All are normal
All are good
All are welcomed.

Some of us are in ableist rehab and that's ok. I'm one of them, which you know if you read [R]Evolution. I have been a deluded individual in regards to those who are differently abled most of my life, mostly due to my privileged culture, but also due to the aforementioned medical terms through which I operate. There wasn't a flash of insight from the gods when I had my son either... but it is through the patience and writings of many an advocate, self and otherwise, that I finally began to comprehend and move forward.

How do we do that then? How to we change thousands of years of underlying ableist metaphors?

One, we have to self-reflect, examine and then change ourselves. How do we really feel about people with intellectual disabilities? About our kids with developmental delays? Do we see them as broken? Not quite right? Lesser? A challenge? (To who? To you?) It's only going to go downhill from here? How about the other way: are they somehow superior to your other children? Blessed with preternatural powers? Is that extra chromosome made of anything other than genetic material? Do you see those with Down syndrome as anything other than an equal, than human?

Then you too need to enter rehab, my friend.

Two, we change our practices. Are we perpetuating othering? Are we putting people on a pedestal? I read this story about sexism at a blog conference and let me tell you, even though the perpetrator is not demeaning women in the traditional sense, his comments are still sexist. In the same vein, depicting people with developmental delays as anything other than, well, people, is still ableist. "Benevolent ableism" or "Pedestal ableism" is still ableism. All the precious-angel-inspiraporn out there, I am looking at you. Please stop.

It's this thinking that has me looking at things like my strap line on the blog "my kid has more chromosomes than your kid". It's got attitude, sure, but is it ableist? I'd really love to change it to "all our chromosomes are f☠☠king awesome" or "Team Logan: Hell yeah!", but somebody would complain about the swearing. In any event, I'm not sure if it is ableist or not, but it does have me thinking about it.

We also have to take a hard look at our views on inclusive education. It is what should be done, period. From kindergarten to graduation to even college. No exceptions. I don't accept the alternatives as better for anyone. All children have the ability to succeed to the best of their own ability. When they are not, it is our responsibility to ensure that they do. Why is the child not succeeding? If that means more aides or tutors, then so be it. If it means challenging traditional approaches to education, if it means forcing the program to fit the child rather than the other way around, then do it. Do what has to be done. No child left behind means NO CHILD. Not a single one, wherever they fall in the neurodiversity spectrum.

The notion that having a child with Down syndrome will plunge you into a deep depression and ruin your family has got to stop. This is the kind of stuff that was perpetuated to promote the asylums and the institutions. This is the story told by every doctor, social worker and health care professional since... well, they are still doing it. It isn't true. I'm not going to deny that there are a lot of angry, unhappy new parents out there. Why is that, other than the perpetuation of the "disability will destroy the family" rhetoric? If you've already been there, examine your feelings at the time. I mean really look at them. Is it possible that you are attributing to DS something that belongs elsewhere? Flip the script and make sure that the supports are out there ahead of time for new parents. If you were misinformed and didn't have a good go initially, why would you want to pass that on to someone else? Change the rhetoric and in the mean time, don't feed it.

Step the third: Look around us and start to challenge the "norms", the stereotypes. It doesn't mean being negative or mean, but it will mean growing a pair from time to time and calling someone out, even though you may be a bit nervous about it. Be polite, be appropriate. Do whatever it is you need to do to get it done, but do it. This also means that you don't have to like every organization that affiliates itself with special needs or Down syndrome. If you don't like their practices, if they do not meet your needs or champion the rights of those with DS, do not support them. Don't share their memes or support them with money. It's really that simple. Challenge paternalistic caregivers, encourage medical practitioners (and everyone else) to embrace the social model of disability.

If we stand any chance of preventing this and this from happening again, we need to make some changes. In order to keep the Amelia's of the world from receiving substandard medical care, we need to rethink this whole thing. We need to encourage those that have the means to create community supports so that the developmentally delayed are not 'housed', but live independently, or where they choose to live (with minimal assistance). We need equality. We need acceptance and inclusion.

We need to stop swinging the pendulum back and forth and just have balance.

I agree with much of what you said, except maybe for the part about parent advocates being dicks. I know why you are saying that, I get it, truly, but it seems unfair and slightly alienating. (And not to me personally, b/c trust me, I am more than willing to accept that label for myself, but not for the many many hardworking, smart, thoughtful advocates I've met in my travels.)

However, not why I wrote in! I'm curious how inclusive education is handled in Canada? The school systems here in the U.S. are a patch work of inclusive practices that sometimes work, sometimes don't, are underfunded or barely exist at all. They vary by school and even by child, with some parents at the very same school whose children have the same diagnosis feeling differently about their child's success and acceptance. In short, it is very complex. I am not worried about my son (yet) as he is on a good path and we know how to advocate for him. But what of all the other children with special needs who aren't being included meaningfully? Please share how it works north of the border.

I'm not saying all parent advocates are dicks. However, to self-advocates in the disability community, a lot of us are seen that way.

It is complex here as well, but I don't think for the same reasons. In Ontario, specifically the GTA where I live, we are inclusive. Period. Your IEP meets, supports are set up, life moves on. I'm still very hazy about the high school years as I am getting different reports from different parents. The variations lie not so much in school to school, but rural vs. urban and whether it is a public or "separate" school board (such as the Catholic school board). I put that in quotes as all are publicly funded. My eldest has had kids with special needs in his class every year. However, a friend of mine who lives 40 mins away had to fight with her separate school board for inclusion. The excuses were silly: We need special equipment (a step stool for the sink), he is too small for the bus (he takes a cab with a car seat), we don't encourage sign language here (WTF?).

Great post as ever Jen, and we know and love you and are used to your straight talking. So proud to be doing talks for docs and teachers and standing on the podiums alongside those with LDs (for want of another phrase) who are standing up and speaking, making films and creating change. Downs Side Up

So much! A friend of mine said in a blog once, "It's no wonder people don't believe in evolution since it takes so damn long for us to actually Evolve." (or something like that) Thought of it a lot throughout your post.For me, there is a tricky balance between fighting for the over all good and betterment for the future and also fighting/getting what's best for your own family. For example, I agree that schools need to be Inclusive. In In In. But 17 years ago when my son started school, I moved him to a private school because I wasn't getting that from the public schools here and he needed what he needed. The schools are Much better served now (in my area) and I am super glad for that. I bear a little guilt for not fighting that battle more than the first 5 years. But only for other parents, not for my son. He thrived in the environment we chose. But ANYWAY - that's it's own deal. I love your tagline. It's what made me love your blog at the very beginning.Keep fighting the good fight.

What You Have to Say About Down Wit Dat:

"Just wanted to let you know how much I admire you. I know you fight a lot of demons, both yours and for others, yet you still maintain that fantastic sense of humor, and more importantly, fairness. You are a constant source of light in the darkness, because you are beautiful inside and out..." - S. R.

"...Wonderfully written and one thing Jen does with her writing is make you stop and think ...and think hard." - J. Toner

"Before I had my little L., I never knew anyone with down syndrome, your page has given me so much hope for my little boy, the people who post pictures of their children and the things that you post are wonderful, its made it easier for me to understand and get used to, thank you, keep doing what your doing with the good work, much appreciation. X." - L. Barnes

"Your post (and the posts of others that you linked to) actually made me tear up a little. Growing up with a brother with Downs, I actually got into fist-fights because of "that word". Hearing it used as a derisive and insulting term by people who should know better (or by those who do know better but are just looking for attention in the case of Coulter) is NEVER ok. Thank you for speaking out.﻿" - I. Thomas

"I love these history posts. This is a TON of work on your part, thank you so much!" --N. Haegele

"I don't have any children yet, and I'm not sure how I ended up reading your blog. But it is absolutely inspirational. I'm so glad Wyatt was born into your family where I am sure he can live a happy fulfilled life." --artandtourism

"Above all, Jen is an amazing mother. She is honest and real, and inspires me everyday to love my "typical" child the way he needs to be loved, respect him as a person, and not even for one single second take him, or anything for granted. She allows me to venture into her life, and care about her and her family. What dear little children she has blessed the world with. She is planting seeds, nurturing and growing her family (and extended reader family) into people who will make this world a better place. Why aren't we all more like that?" —Penny

"Jen and her family have an amazing story and mission. Jen's writing reflects the difficult and triumphant steps of life with a special needs child; twins at that, and a older sibling. Thank you for sharing your families' strength with the on-line community."--S.B.

"I think I'm a little bit in love with Jen, and if she lived down the road I might just be a blogging groupie, not because I'm a crazy stalker I hasten to add, but because the easy warmth in which she tells her story convinces you that you are simply having an easy chat with your best friend. She has a subtle wit and craft to her blog posts, they are not just splurges of untamed emotion. This enables her to not only tell her story with honesty and in an enjoyable way, she also manages to impart a message without coming across as patronising or preaching. It's a rare gift for a blog about special needs."— Renata

"Having a child with special needs can be an isolating experience -- even more so when you live half a world away from your friends and family. Due to this, the internet became my primary source of support and camaraderie with other parents in similar situations. I read dozens, if not hundreds, of blogs about being the parent of a child with T21, and though most had positive points, for the most part they just didn't 'speak' to me and what I was feeling. Then came Jen and 'Down Wit Dat'. Suddenly, I heard a voice that was in harmony with the things I was feeling and going through. Her writing is so brutally honest, while at the same time insightful and informative...not to mention FUNNY! If there has been one thing I've learned on this journey, it's the importance of keeping your sense of humour -- even when you seem to be losing your sanity. Thank you so much, Jen, for putting out there the human, REAL side of our special club -- and being a voice for those of us that are so often unheard." — Dee

"I love the honesty, Jen never glosses over the difficulties and never fails to celebrate the victories. My children are not special needs but I can always find commonalities and it has opened my eyes to the fact that people with Down syndrome are not as different from the rest of us as they might initially appear. Since I've known Jen and been reading her blog my attitudes toward respect, and what it means, have changed. "The "r" word" particularly hit home as I had been ignorant to the effects of the use of that word. I do my best to help spread the message."--Susanne

"I have been following this blog for months now. I have nothing but positive thoughts and warm fizzy feelings when reading it. My only regret is not having found this blog when it was originally started. One piece that particularly sticks out to me, was the blog about the "r" word. I don't think I have actually cried so much reading a blog that wasn't about someone dying. I printed it off and shared it with many friends, because Jen is right. She struck a nerve and made me realize that not only myself, but there are many others around me that use that word without realizing how powerful it really is. Down Wit Dat is a blog full of enthusiasm, awareness, whole heartedness, truth, encouragement, laughter, but best of all, its full of Jen, FAMILY, and a look at what having a special needs child is about. Keep writing. You're amazing!" —B. Nason

"I love Jen's take on the special hand that she and her family have been dealt. I especially love that while she shares all her son's small victories she doesn't gloss over the challenges that she and her family face. The best thing I love about Jen and her blog is that she is constant supporter of the rights and challenges of kids and adults with Down Syndrome. She has provide a lot of insight that has opened my eyes and many others. I especially loved her blog about the "r" word. It opened dialogue with my family, friends and groups that I am a part; and I am much more conscientious about the words I used to describe people"--V. Saenz-Brown

"Jen's blog is wonderful! While I do not have a down child, as a mom, I relate to the everyday struggles of just doing your best, of the struggles, the heartaches, the joys of everyday life. Jen writes in a positive and uplifting style with just the right doses of humor thrown. Great read!" —Terra

"This blog is written from the parents perspective, which is important. Jen's story is not unique, but the way she tells it, with humor and honesty is wonderfully refreshing. It brings a real perspective that people can understand and relate to, and is a resource for parents of not just Down Syndrome kids but of all kids to know that life may not be perfect but that everyone has a unique way of dealing with it."—Kimberly

"I too am the mother of a down child. It gives me great giggles, sorrow, and camaraderie to read her blog daily. I find it makes life's little challenges more bearable. She is honest, upfront and a wealth of information. And I think her attitude is one many of us share and embrace. Even if she does not win, she is a huge winner already in my book. Lots of luck and love to her and her amazing family." —L.Grassa

"I love Down Wit Dat because Jen is so honest about her experience as a parent. Jen is not afraid to write about her vulnerability, anger, fear, joy, or love. She's an amazing writer! Jen's description of her blog is so bang on! I laugh and I cry, sometimes simultaneously."—Marla

"I am currently a Disability Services major in college and for my one class we had to find a blog by a parent who has a child with a disability to follow and discuss with the class every week. I have been following your blog for a couple weeks now and I get so excited to talk about little Wyatt and what an amazing family he has and the struggles and victories that you all over come daily! Someday down the road I hope to have children and if I am granted a special needs child I can only hope that I can handle everything that comes my way as positive and good as you do! You are doing an amazing job and are a great mother! Thank you so much for sharing your story!"--Anonymous

"Your blog is incredibly inspiring. I have laughed out loud, been in tears, and everything in between! it's fabulous." -HDSSG

"If you haven't been told today... you're awesome." - Trevor

"Wyatt is fortunate to have such a mom." - Anonymous

"...Thanks for your honesty and insightful points. It helps put our own thoughts into words to pass on when we encounter the same situations." - P

"I am enjoying reading your blog. I taught preschool/education for about 35 yrs and most of it was spent in CA where there is encouraged mainstreaming. I enjoyed having special needs kids...they bring a special and fun element into the classroom! I also had a young man with Downs who was my class helper at one time...he was so much fun! I wish people knew these things....as there are preconceived ideas..." - Jenny

"I remember speaking with you when you found out about the possibility of one of the babies having some abnormalities, and you did not know how you would handle it. My response was, once the situation arises you will find ways to deal with it. I must say, you have done so well with your children, especially with Wyatt. You are not ashamed to embraced what God has blessed you with, and to share your new found info with others who might be less fortunate, and to those who might be less accepting. I am sure you have empowered many people who are in the same situation and need a little love and support. You've turned negatives into positives. I must say you are an awesome mom. Keep up the good work, it not going unnoticed." - K. Garwood

"... I just started reading from the beginning... I am intrigued. It is so incredibly well written with so much love. There were parts I would start to cry. I felt your sadness and your happiness and your passion. These children are so lucky to have you as their mother. I can't wait to read the rest of it and get caught up!!! Thank you so much for sharing your life with us! ?" - M. Laine

"Just had a few minutes to read more of the blog and I must say I LOVE it! I could not agree more that so much of the info I found as a new mom was SO depressing. I didn't jump for joy with the dex of T21 but it wasn't anything I could change so we accepted -and started to read everything we could get our hands on. Can't wait to read more..." - E. Chesnut

"I wanted to say I love your blog. You write so honestly... Thank you for writing so candidly." - M. Antushevich

"Found your page completely randomly while trying to connect with other wine blogs like myself. I do not have any kids or know anyone with Down Syndrome but your blog really captivated me. I guess that is how good it is. Keep up the good work :) " - The Frugal Tasters

"There are going to be many times when i say how courageous you are! I do not think it can be said enough, you take YOUR time to educate and inform and rid parents of their fears! THANK YOU THANK YOU THANK YOU . I wish my kids were old enough to read and understand! Hopefully one day the maturity level will be there so they can and come to appreciate life more not for the big things but for the everyday moments that will mean more than the big ones EVER will! ?" - C. Cochran

"I, too have a son name Wyatt who happens to have an extra 21st! He was born 2/15/11! Thanks for sharing your story. We're in good company : ). " - R. Scheerer

"My daughter will be 8 in Nov. Unfortunately, my parents I felt were ashamed of my daughter. If only they had gotten to know her before they passed on....." - A. Welsh

"I always enjoy your straight forward, tell it like it is posts. People need this information. They need to know how their ignorant, or often well intentioned but uninformed, words and actions are frustrating, annoying and/or hurtful." - Shayna